Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#37797 09-10-2004 05:54 AM
Joined: Jul 2004
Posts: 12
Terry K Offline OP
Member
OP Offline
Member

Joined: Jul 2004
Posts: 12
I understand there is an injection I can take three times a week called Amifostine that will lessen the probrability I will lose my saliva glands as a result of the daily radiation treatments I am taking for the SCC cancer at the base of my tongue. Does anyone have any experience with this drug and does it work? I understand possible side effects are low blood pressure and nausia, but the doctors will monitor my blood pressure and give me Zofran for the nausia. Your comments are appreciated.
Terry


Terry
#37798 09-10-2004 06:33 AM
Joined: Mar 2003
Posts: 251
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Mar 2003
Posts: 251
Terry,
My husband stubbornly stuck with the Amifostine 5 days a week for all 37 radiation treatments...even though it made him pretty sick (but he was also on chemo, so the combination may have made it worse).

Frankly, he is fairly disappointed at how little preservation of salivary function he has (at about 1 and 1/2 years out from treatment). ENT tells him more could still come back.

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#37799 09-10-2004 06:59 AM
Joined: Jun 2004
Posts: 85
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Jun 2004
Posts: 85
Terry,

I had an Amifostine shot everyday before my radiation treatment. They have a minimum timeframe after subcutaneous injection in order to get you into radiation, so I never had to wait long. I took Compazine as my antiemetic for 5 weeks with Zofran the last week and 1/2. I was only sick the 31st and 33nd day, but I believe it was due to the buildup of mucous overnight followed by some poor breakfast choices.

The other side effect is low blood pressure following the injection. That didn't occur with me either. They are to inject into fatty tissue, alternating sites in case of allergic reaction. We used four sites: the back of both arms and the front of my stomach above the belt line. It did hurt during injection, but less so if they patiently injected (slowly) the drug. After a couple of weeks the sites became a bit sore, and after five weeks started to itch for about five days. Benadryl had no effect, but I didn't feel the need to take anything more.


I was highly motivated to use the drug, especially once I heard it would help throughout the treatment and reduce the effects of radiation. Apparently they were right because I experienced little pain that an occasional Percocet (2 per day) couldn't fix through the first five weeks. Also, I was able to eat solid though increasingly watery/milky food throughout the treatments. Good Luck. Still too early to say how much saliva I have or will have.

Three days out of radiation I had a rapid increase in pain and swelling. The first thing my wife said was, "Too bad you weren't still on the Amifostine."

David


T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
#37800 09-10-2004 07:14 AM
Joined: Feb 2004
Posts: 162
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Feb 2004
Posts: 162
Hi Terry,

I also took Amifostine injections and only missed two of thirty treatments because of low blood pressure. The injections do smart some, but the good thing is it puts you on the clock in relation to the machine. There is only a small window of time in which the drug is effective so the folks running the machine have ensure you receive your radiation treatment within that time frame -- it sure minimized the waiting time.

I'm over eight months post-treatment now and while I'm not completely dry, I don't have as much syliva as I had hoped. The docs tell me it could take up to two years before I get all I'm going to get. Either way, I'm glad I did it as I wanted to be proactive and do everything possible to mitigate the side effects of treatment.

Best of luck...

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
#37801 09-10-2004 10:22 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Terry,

I tried the Amifostine (Ethyol) and unfortunately now list it as a known allergy. I had a terrible reaction that started about the 2nd week with my fever spiking to about 104 within 30 minutes after injection. My entire body turned red, too. It was suspected that the Ethyol was the culprit and after being hospitalized, we stopped it and the symptoms disappeared.

Strangely, I was taking Salagen and even tried Evoxac to stimulate salive but there has been more saliva since I stopped both. If the wind is blowing and I am outside, I can not open my mouth or my tongue sticks to the roof of my mouth. Waking in the morning I have a pool of thick white goo that I just rinse out. Otherwise, I can eat about anything even without drinking water. I tend to drink a lot of water because it just feels better when I swallow.

I did vomit almost on cue 30 minutes after the Ethyol injection and no amount of medication helped. Since you don't know me or where I live, I will admit I smoked pot eek and the vomiting stopped immediately. My fear of the smoking causing a recurrence and paranoia of the police or my children finding out prompted me to stop and I stopped the Ethyol anyway.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#37802 09-10-2004 10:23 AM
Joined: Mar 2002
Posts: 102
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Mar 2002
Posts: 102
I would recommend giving it a try. My husband had amifostine, back in the dark ages (four years ago but in the medical field that is a long time) when they gave via IV push. He did have some low blood pressure, nothing major though, and the nausea he was able to control with compazine and then Zofran toward the end. His mouth was pretty dry for awhile post treatment, but four years out he has a pretty good supply of saliva. For about 2 years after radiation he had to have a glass of water to eat anything and he was always holding a bottle wherever he went. This past visit to Dr (four year check up), the Dr was like, "Where is your water bottle?" He said, "don't need it!"
For him, it was worth it.


Julie
Wife to Kelly
SSC tonsil Stage IV
July 2000
#37803 09-10-2004 12:16 PM
Joined: Jul 2003
Posts: 1,163
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2003
Posts: 1,163
Hello Terry,

I had IMRT radiation and took nothing for saliva
function. My cancer was on the right tonsil. After 33 rad treatments I still have some salvia function. I have read alot of pro's and con's about the drugs that are supposed to help with saving saliva function. Best Wishes, Go Pack!!!

Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#37804 09-10-2004 08:29 PM
Joined: Apr 2004
Posts: 146
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Apr 2004
Posts: 146
Hi Terry,

I had a daily injection of amifostine for all 37 of my rad treatments. They alternated the injection site between the left and right upper back hip / butt area. They injected the first shot in my stomach above my belt line but since I had / have very little fat to spare in that area they switched to the upper hip / butt area. It smarted and hurt some but I never really experienced any more naseau than what I got from the chemo. I received my shot 30 minutes before each rad treatment so my rad docs were also on a tight schedule to get me in on time. I'm 10 months post Tx and my saliva production is pretty good although I do get dry mouth and require drinking a lot of water when I eat. For me, I would hate to see what my saliva (or lack thereof) would be had I not had the amifostine. As you can see everyone is different but if you can tolerate the drug then I'd say go for it. I had the attitude that I had nothing to lose and, hopefully, saliva to gain.

Good luck going forward with your treatments. We're here to listen and offer any support you need.

Hugs, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#37805 09-11-2004 05:57 AM
Joined: Feb 2004
Posts: 261
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Feb 2004
Posts: 261
It made me sick. Doc's took me off of it after 4 days. I think it was an allergic reaction. I would go into uncontrollable sneezing fits & my blood pressure dropped some. Got worse each day. Good luck!


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
#37806 09-11-2004 09:35 AM
Joined: May 2003
Posts: 928
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2003
Posts: 928
My Husband had 5 amifostine treatments but his nausea was so bad they had to stop..we could not even reach the car before he started.
It is worth trying ANYTHING that will help with saliva retention, the longer he can go the better his chances.
Good luck to you both in the months ahead.
Take Care
Marica
Caregiver to Husband SCC stage IV base of tongue . Chemo /radiation, no surgery. Finished treatment 7/03 doing great!


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5